Morning All, I'm 30 years old with one child and the endo pain is so bad that the consultant gynaecologist has offered my a full hysterectomy with excision of the ovaries. So following this I will be put on HRT. I don't want anymore children and honestly I'm relieved that this is the outcome. Just wondered if there is anyone my age that has had this done? How did you find it? Does it affect you much in activities e.g. sex etc...?
Sorry for the bombardment of questions but I've read loads of peer review literature re: studies etc... but I want some thoughts from people who have actually been through this.
Thanks
Kc138
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Kc138
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I don't have any advice but I'm very interested in the responses you get as I'm 31 with one child and severe endo. Not sure what stage it is but it's highly unlikely I'll conceive again. Hysterectomy is one of my options but I'm meeting with my gyni in January to discuss. I feel like I'm too young at 31 but if it's the best option, I'm willing to consider it. Im pleased that you've got the outcome you wanted/needed and hope the op goes well. When is it? X
I am really pleased with this decision, it's certainly not one to take lightly and it's not for everyone but my pain is so severe I just want it done with. We don't want anymore children and if we did we would adopt as that is something we've always wanted to do. I've just started the 3 month trial on the implant that mimics a hysterectomy so if this works then we will go ahead with the op. So probably looking at 4-6months time. If it doesn't work they will do a surgery to strip the membrane of the perineum and remove all the endo tissue. My concern with that is, how much can they strip away before problems start to occur.
It is a young age but I want a better quality of life. Right now I'm in pain daily and I take zapain 30/500mg, Mefanamic acid 500mg, dihydrocodeine 30mg and amitripylline 50mg just to keep the pain under control. So weighing up my options.......it's a no-brainer.
Good luck with your appt, I wish you all the best and just do what you feel is right xx
I'm still at an early stage as I was diagnosed following lap only last week. I'm still getting my head around things so I haven't thought too much into my options yet, just gathering information, so you advice is really helpful. I'm not in pain daily, it's mainly during periods with a few days either side and some discomfort for the rest of the month. It definitely sounds like the right move for you. All I know is that I can't live like this much more so something's got to give! Good luck with your implant trial - it seems anything less than a hysterectomy would leave you dissatisfied so I hope it works for you. Thanks for your advice x
Hi it is a whirlwind of emotion when you're first diagnosed and it's difficult because they still don't know what the real cause is, no cure etc... I felt really lost because there just isn't the info available.
If you ever want to talk feel free to add me on facebook under Kristy Elizabeth.
Endometriosis uk website is fantastic and full of info and through there you may be able to find local support groups in your area. It's good to hear others peoples perspective and it's great for support as you don't feel so alone.
As I said though, feel free to add me if you ever want to chat etc... xx
I do feel very emotional and have a good old cry most days at the moment. I've been using the website a lot (that's how I found this forum) but ultimately I need to see my gyni as the website can't possibly address every issue as each case is different. Sadly there are no support groups in Dorset so I have emailed them to let them know. Sure there are hundreds of us in this county suffering!
If I look for you on Facebook how will I know you're the right person? I'm Adrianne by the way x
Nice to meet you Adrianne! Yes you're absolutely right. Your gynae doc will hopefully address all your concerns. Crying is good!!! It releases all those emotions and I always feel better after a good cry!
So on facebook my profile pic is of 4 girls with purple, pink and blue lighting.......In my defence it was an 80s themed hen do haha!
It's a shame there isn't a support group where you are, but hopefully things will change. I was always a bit scared of support groups as my perception of them was like the AA meetings that you see in films (sitting in a circle and going round saying your name etc...) actually it's more like a coffee morning with friends who are experiencing the same issues. X
Hiya I can't give an answer but cheekily jumping on the band wagon in that I am likely to opt for hysterectomy next year too, I'm 32, no babies but 5 losses. Long Endo history and suspected Adeno' too.
I hope you get some answers and I think in the long rung, you just have to go with your gut and what you feel based on what you know is right as many people are very anti Hysterectomys I noticed, which is understandable as like you say, not to be taken lightly, but I also think for women considering it to help manage pain and life style so to speak. It speaks volumes of the nasty impact of Endo.
Hi all, a hysterectomy is not the correct treatment for endo this is an old fashioned notion. Experts in endo now believe in removing the disease by excising it (cutting it out) not removing healthy organs. A hysterectomy only treats problems with the womb itself such as adenomyosis.
Having your ovaries removed can cause all kinds of other issues, and problems with your overall health, **Kc138 you are still very young there is NO way I would agree to that.
I would suggest you all ask to be referred to an endo specialist on the NHS at one of the BSGE centres - depending on where you are the rules are different, but in England it's very straightforward. bsge.org.uk/ec-BSGE-accredi... The level of skill at them does seem to vary, so please do your research before you choose which one to go to.
Hi there my name is Tracy, and I also had a hysterectomy at 30, only difference is mine was eleted as I was in so much pain I begged for it. It was a hard decision to make as I never had a child. Do I regret it, hell no. I only regret leaving one ovary which i asked the doc to do bcuz now that ovary also has endo on it and is causing me prob. I was worried about going into menopause at such a young age that is why I asked to keep one ovary. Really all u need to do is get on some bioidentical hormones not the kind your gyno gives u they're synthetic. Find a hormone specialist but whatever u do make sure u take no estrogen bcuz ur asking to stimulate any endo that still remains. If the hormone specialiat u see goes only by levels in your blood find another. Take it from me. I went to a girl that insisted I have estrogen who knew nothing about endo and now I'm going on my 5th surgery bcuz she put estrogen in my creme. Also, if u have any endo that wasn't removed before your hysterectomy it won't help getting the hysterectomy. Make sure u have a good surgeon to remove endo b4 hysterectomy. If he's not doing this first you will wnd up with life long pain. Please trust me. The only reason I'm going on my 5th surgery is bcuz all endo wasn't removed prior to my hysterectomy. U may have to go thru tons of doctors to find a good one. I've been thru 20. I think the team I have now will be great. I'm actually going to a cancer center to have them remove it. Who wld have thought? Hope I helpes u and best of luck to u.
Hi all I had to have a hystercomty at the age of 25 after my 2nd child couldn't control my bleeding tyres every thing had llez treatment to burn my ad normal cells off etc . When they did my hystercomty left both my overies in which now are both covered in cysts now and consulant thinks I have emdometriosis every month I get pain in my left side and tummy swells up . I've now been offered gnrh injections to switch my overies off even though I don't have periods . The doc thinks by having these injections it could help it would mean me going throu the change and on hrt at the age of 31 .....
Hi I had a hysterectomy including removal of ovaries at 31. I had tried an ablation of uterus and lazier surgery but my endo was very sever stage 4 and it came back quickly. My surgeon was very experienced but this was 15 years ago so I know things have changed. For me it was the best thing ever. Thr surgery was tough two bowel rejections and a lot of surgery to seperate everything before taking out my ovaries and uterus. The disease and several surgeries has left me with some minor pain from adhesions and nerve damage but I now can hold down a job, stand on my feet and am relatively an free and getting on with a quality of life. I did 12 months no hrt to be sure any deposits dried up. I then went onto a very low estradiol gel and progesterone capsule which I still take. With no hrt I was a little out of sorts tired low sex drive but once I found a hrt to suit this has all improved. I also ended up with an under active thyroid about 18 months post surgery but had over active thyroid problems from early 20's. I do have some adhesions and I have to watch my diet with my bowel but I am endo free. I embrace every day as the endo took so much of my quality of life away and feel great that I have a lot of it back now. Hope my account of my experience helps. Tina x
Arcadia 77 - I do completely understand where you are coming from and I have done a lot of research. I am a healthcare professional myself and though my speciality isn't in gynaecology and I am very well informed regarding current thinking and literature. The problem for us all is that there still isn't enough know about the underlying causes of endometriosis and whilst things that are offered may seem extreme to some, they are a sigh of relief to others.
At our hospital we have an amazing gynaecology team and one of the best endometriosis specialists in the country.
Before agreeing to such a surgery my gynaecologist made me fully aware that even with a full hysterectomy (including excision of the ovaries) I may still experience pain and the endo may return BUT if it at least takes the level of pain down a few notches so I can return to normality then it is worth doing. Instead of jumping straight in we have opted for a 3 month trial on prostrap to essentially mimic the action of a hysterectomy. If this is successfully we will move forward with the hysterectomy, if it has no impact whatsoever I go into surgery with the endo specialist for a complete strip of the membranes (my endo is in the pouch of douglas and the ovarian fossa's).
I am currently on month 2 of my prostrap injection and it is helping. Where I go from here......we shall see in a months time.
To all of you who commented thank you so much for your sharing your experiences and support. I hope we all kick endo's butt someday and I hopr in the future it can be cured with a pill or even prevented! X
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